Tag: Helen Whately

The statement made by Helen Whately, the Minister for Care, in the House of Commons on 8 March 2021.

This pandemic has asked so much of our health and care system. The whole country recognises how our NHS workforce have performed with distinction and gone the extra mile throughout this crisis, which has also had a huge impact on our economy. It has been and still is a tough time for businesses and all those who work in them.

As hon. Members will be aware, most of the public sector is having a pay freeze. However, even against that backdrop, we will continue to provide pay rises for NHS workers, as the Chancellor set out at the spending review. This follows a multi-year pay deal, which over a million NHS staff have benefited from and which includes a pay rise of over 12% for newly qualified nurses. We are also ramping up our investment in our NHS, with a £6.2 billion increase for 2021-22, as part of our £34 billion commitment by 2024-25, and £3 billion for supporting recovery and reducing waiting lists. As part of that, we are increasing the number of staff in the NHS, with over 6,500 more doctors, almost 10,600 more nurses, and over 18,700 more health support workers in the NHS now than a year ago. We are also on track to have 50,000 more nurses in the NHS by the end of the Parliament.

Last week, we submitted our evidence to the NHS pay review bodies, which are independent advisory bodies made up of industry experts. Their recommendations are based on an assessment of evidence from a range of stakeholders, including trade unions. They will report their recommendations in late spring, and we will carefully consider their recommendations when we receive them.

I can assure the House that we are committed to the NHS and to the amazing people who work in it. Just as they have been so vital throughout this pandemic, they will continue to be the very essence of our health service, together with all those who work in social care, as we come through this pandemic and build a health and care system for the future.

The comments made by Helen Whately, the Minister for Care, on 18 February 2021.

I’m delighted to see such an incredible boost in this year’s applications, with more mature applicants helping to contribute to a diverse and truly representative nursing workforce. Thank you to everyone who has stepped up to support our health and social care services.

These are the nurses of the future who will help the NHS and social care recover from this pandemic and continue to deliver world-class care to patients for years to come.

These figures are a testament to the work of Health Education England and UCAS in highlighting nursing as a rewarding and accessible career path, as well as the remarkable achievements of all health and care professionals over the past year.

We’re another step closer to delivering 50,000 more nurses for our NHS and providing better healthcare for everyone.

The speech made by Helen Whately, the Minister for Care, in the House of Commons on 17 September, in reply to Tom Randall.

I congratulate my hon. Friend the Member for Gedling (Tom Randall) on securing this debate and on bringing the House’s attention to the need for earlier diagnosis of axial ​spondyloarthritis. May I say how important it is that he has brought his personal experience to the debate? The House should appreciate the courage he has shown to speak up about his own condition—something that cannot be easy, but that is an example. I feel strongly that all of us bring our own experiences to our work. That is one of the reasons it is important to have a diverse House of Commons. He has brought his own extremely painful experience to bear. I am confident that simply by doing so, he will make a difference for many others who suffer from this painful condition or who may do so in the future.

My hon. Friend rightly highlighted how critical it is for those with axial spondyloarthritis to get the right diagnosis and get it quickly, and to have their symptoms taken seriously by all healthcare professionals. It is clearly incredibly important to ensure that people can access the right sort of care at the right time, as it can prevent the potentially devastating impact of the condition on quality of life. I very much appreciate from his account and from others I have read how the condition affects people and their loved ones. We must do all we can to reduce the impact on people’s physical and mental health, and I want to do so.

As my hon. Friend said, axial spondyloarthritis, which may also be referred to as axial SpA or AS, is a form of inflammatory arthritis that most commonly affects the spine. It is a painful long-term condition that currently has no cure. As well as affecting the joints in the spine, it can affect the chest, the pelvis and other joints, ligaments and tendons. Unfortunately, AS is often misdiagnosed as mechanical lower back pain or diagnosed late, leading to delays in access to effective treatments. It is estimated that approximately 220,000 people, or one in 200 of the adult population in the UK, have the condition.

As my hon. Friend said, the average age of onset is relatively young at 24, with patients having to wait on average eight and a half years before diagnosis at an average age of 32. That is clearly far too long to be waiting for a diagnosis, because left untreated the condition can lead to irreversible spinal fusion, causing severe disability. That makes a rapid referral to specialist care for those with any signs or symptoms crucial to treatment and to preventing those kinds of outcomes.

I recognise that AS can have a devastating effect on the quality of life of people who sadly go undiagnosed or misdiagnosed for far too long. This must get better. It is clear to me that early diagnosis and treatment are the key to preventing the development of other serious conditions further down the line and to improving the quality of life of those who suffer from this condition.

We recognise that one major reason for the delays in diagnosing axial SpA is a lack of awareness of the condition among healthcare professionals and the general public. That can take many forms: a lack of awareness of different types of arthritis; a lack of knowledge about the differences between inflammatory and mechanical back pain; or misunderstanding that AS affects similar numbers of men and women. Educational interventions to improve the level of awareness should lead to improvements in earlier diagnosis, and a range of materials are being produced to this effect. For example, an online training module on AS for GPs has been produced by the Royal College of General Practitioners.​

In June this year, the National Institute for Health and Clinical Excellence published its managing spondyloarthritis in adults pathway, which has been well received by patient groups and charities. This set out recommendations for healthcare professionals in diagnosing and managing axial SpA in adults. It describes how to improve the quality of care being provided or commissioned in this area, both through guidance and via an associated quality standard. I completely agree that we would expect providers and commissioners to be following the guidance and recommendations in this area so that we can improve the overall rate of earlier diagnosis. It is not only important that we have this guidance but that it will be within the pathway that the APPG and my hon. Friend have argued should be put into place in practice.

Munira Wilson

While I welcome the guidance and the pathway, what does the Minister suggest can be done to tackle the clinical conservatism that we quite often find among specialists even once the diagnosis is made? In my husband’s case, the rheumatologists said to him, “You are far too young for us to move you on to the more advanced treatments”, so he was living with huge amounts of pain on just very mild painkillers and steroids. It was only because we happen to live in London that we got him re-referred to a world-leading specialist in the field who then put him on anti-TNFs. He is now able to be the primary carer of our two very young, active children, which he could not do otherwise. Not everybody has that luxury, especially if they live in a rural area.

Helen Whately

The hon. Member makes a really important point, again drawing from her own personal and family experience, about the importance of awareness of what is the best treatment for this condition. If she would like me to do so, I am happy to take away her specific point and look into how we can address the need for improvement in the treatment, as well as her general point about needing a better pathway. I am also happy to meet my hon. Friend the Member for Gedling, as he requested, to talk further about how we can make more progress on the right treatment for this condition, and awareness of it.

Coming back to the overall points about what we can do to improve the treatment, the NHS long-term plan set out our plans to improve healthcare for people with long-term conditions, including axial SpA. That includes making sure that everybody should have direct access to a musculoskeletal first-contact practitioner, expanding the number of physiotherapists working in primary care networks, and improving diagnosis by enabling people to access these services without first needing a GP referral—in fact, going directly to speak to somebody with particular expertise in the area of musculoskeletal conditions. The hon. Member for York Central (Rachael Maskell) intervened to make a point about the demands on physiotherapists. I have asked to be kept updated on progress on delivering the expansion of the number of physiotherapists in primary care networks and, more broadly, on the implementation of the NHS long-term plan. We do indeed need to make sure that we have sufficient physiotherapists to be able to deliver on that. I anticipate that that should have a positive impact on the problem of delayed diagnosis for a range of conditions, and particularly for this specific condition.​

While better education and awareness of AS should improve the situation, there is clearly more that we can and must do to understand the condition. The National Institute for Health Research is funding a wide range of studies on musculoskeletal conditions, including AS specifically. That research covers both earlier diagnosis and treatment options for the condition, so that we continue to build our understanding of good practice and improve both the treatment and the outcomes for those who have the condition.

In conclusion, I want to pick up on my hon. Friend’s point about the importance of awareness and the call for an awareness campaign by the APPG, and I should of course commend the National Axial Spondyloarthritis Society for its work in this area. My hon. Friend mentioned that there is clearly a huge amount of public health messaging going out at the moment, but I hope the time will come when we can gain more airtime for this particular condition. However, the fact that we are having this conversation in the Chamber is in itself a step towards raising awareness of the condition, and so, ​too, is all the work that is going on; that is important as well, because along with having the policy and the pathway, we must make sure it is put into practice.

I congratulate my hon. Friend again on bringing this subject to the attention of the House and on the work he is doing and the effect that this will have. I truly want to support him and to do our best for all who suffer from this condition and may suffer from it in future, to ensure that we achieve much earlier diagnosis and treatment and better outcomes for those with the condition.

Madam Deputy Speaker (Dame Eleanor Laing)

I commend the hon. Member for Gedling (Tom Randall) on his courage in bringing such a personal and difficult matter before the House. Many people will not appreciate that that is a difficult thing to do, and I am sure that he will have made a difference to many by what he has done today. [Hon. Members: “Hear, hear.”] I am pleased that those in the Chamber are in agreement.

Below is the text of the statement made by Helen Whately, the Minister for Care, in the House of Commons on 19 May 2020.

I beg to move,

That the draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020, which were laid before this House on 25 February, be approved.

Before I explain the draft regulations, I would like to say a few words about why we are changing the law on organ donation. Today more than 5,000 people in England are waiting for a transplant, but, sadly, by the time a suitable organ is found some people will have become too ill to receive one. Tragically, last year alone 777 patients were removed from the transplant list and 400 died waiting for a transplant. There is no option but to take decisive action to address the acute shortage of organs and save the lives of those waiting for a transplant. That is why we passed the Organ Donation (Deemed Consent) Act 2019, which amends the Human Tissue Act 2004 and sets up the new system of consent for organ and tissue donation in England, which is known as “deemed consent” or “opt-out”.

I wish to thank the hon. Member for Barnsley Central (Dan Jarvis), my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe), my right hon. Friends the Members for Maidenhead (Mrs May) and for South West Surrey (Jeremy Hunt), a previous Member of this House, Geoffrey Robinson, and Lord Hunt of Kings Heath for their work and support, which has got us to where we are today. They all started this journey for us showing immense leadership, and they continue to show their strong commitment to this cause.

Subject to approval of these regulations, we aim for deemed consent to become legal on 20 May. While not many transplants are taking place earlier, during the peak of covid-19, NHS Blood and Transplant has already started the recovery process to get transplant units up and running as much as possible. Guidance on how best to restart or extend the transplant service was sent by NHSBT to all transplant units on 26 April. A letter was then sent on 1 May to all trusts with transplant units, asking them to actively review the situation where transplant units have reduced their services.

To illustrate the progress that is being made to get the transplant system up and running again, on a normal day NHS Blood and Transplant would have received about 55 referrals of a potential donor and would aim for five actual donors, and it would carry out about 70 transplants a week. During the peak of the pandemic, there were days when there were no referrals, many days when there were no donors, and many days when there were no transplants. As of last week, there have been 167 referrals, 11 donors and 38 transplants. Continuing the tremendous effort to restore all transplant services will enable us to reap the benefits of the deemed consent legislation as soon as possible; by “benefits” I mean save the lives of people waiting for transplants.

I understand that some have disagreed with the timing of going ahead with this law, but we assessed the impact of going ahead with deemed consent very carefully. This horrific pandemic taught us a lot about how precious ​human life is, and we know that the fight against it will continue for some time, while thousands of people will still be waiting for a transplant. I therefore believe very strongly that we have a duty now, more than ever, to push ahead with measures that will reduce human suffering and help people to improve their quality of life. That is exactly what this law does.

We are of course fully aware that public confidence is important. The deemed consent legislation was first introduced to the House in July 2017, and became law in March 2019, so it has had a long process of parliamentary scrutiny, alongside three public consultations. The Government have been raising awareness of the law and the choices available for over a year, and the 20 May implementation date has been used actively in communications since late February. Putting this legislation on hold would increase the anxiety of thousands of people, who see this law as their only hope to get a new lease of life, and would confuse the communications that have already been in the public domain for some time.

From the outset, we have been clear that deemed consent would apply only for routine transplants, to increase the number of organs and tissues available and help those that are on a waiting list. Examples of routine transplants are heart, kidneys or lungs. Novel transplants will still require express consent. The organs and tissues specified in the regulations are included because they could be used for non-routine transplants, such as a face transplant. Such transplants are outside the scope of what we want to achieve. Demand for novel transplants is very low, and people would not normally identify organ donation with them.

During formal scrutiny of the regulations, the Joint Committee on Statutory Instruments cleared the regulations with no comments. Meanwhile, the Secondary Legislation Scrutiny Committee drew the regulations to the attention of the House, and this is testimony to how integral the regulations are for making the new system of consent work, and how important the law change will be when it is introduced.

Let me now discuss the detail of the regulations. The Organ Donation (Deemed Consent) Act 2019 sets out that deemed consent to transplant activities in England will apply only to permitted material. The Secretary of State has a delegated power to specify in regulations what relevant material—meaning, what organs, tissue and cells—will be excluded from the system of deemed consent. To clarify, the organs, tissues and specific cells that are listed in the draft statutory instrument are organs, tissues and cells that cannot be transplanted without express consent being in place, as that would be a novel transplant.

Regulation 2(2) sets out the detailed list of organs and tissues that will require express consent in order to be transplanted under all circumstances—such as the brain, spinal cord and face. As a result of our consultation, we expanded the list of reproductive organs and tissues in this regulation, to provide clarity and put it beyond doubt that removing any parts of a reproductive organ will require express consent in all cases. This is to ensure that if and when such transplants are carried out in future in the UK, they will be outside the scope of deemed consent.

Regulation 2(3) sets out that some relevant material—for example, skin or bone—will require express consent if used for a novel transplant, but not if used for a routine ​transplant. This is to ensure that current practices for tissue donation, under which tissue from a leg, for example, is removed routinely, are not disrupted by deemed consent. So, although a leg transplant would require express consent, if only the skin from a leg is taken, deemed consent may apply; however, if tissue is required from reproductive organs, this will always require express consent. That addresses the feedback from our consultation.

Regulation 2(4) allows for the trachea to be removed under deemed consent when it is attached to the lungs. This is to allow routine heart and lung transplants, which also require the trachea to be removed with the heart and lungs, to continue under deemed consent. However, the trachea is also listed in regulation 2(2), as trachea transplants by themselves are novel and therefore excluded from deemed consent.

Regulation 2(5) excludes the removal of certain cells if they are to be used for advanced therapy medicinal products—also known as ATMPs—which are therapies made from tissue cells or genes after manipulation in a laboratory. They are used for treatment of a disease or injury, and often use human tissues and cells as starting materials. For example, an ATMP can treat knee damage by taking cartilage cells from a living patient, growing and modifying them in a lab, and re-injecting them into the patient’s knee.

ATMPs are an exciting technology, and new therapies are being developed all the time. Current ATMPs are being developed using tissue and cells taken from living donors, but it is also possible to use material from deceased donors to develop novel ATMPs. As such ATMPs are novel, we want to make sure that the donation of such cells cannot happen without express consent being in place. Our consultation raised questions about the public’s understanding of such novel technologies, so we want to ensure that express consent is required.

Now that I have set out the detail of the regulations, I must highlight that before deciding whether a change to the regulations would be needed in future, the Government would need to consider evidence, public acceptability and clinical need, guided by recommendations from NHSBT’s advisory group research and innovation in transplants. Any changes would need to be approved by Parliament, following the same procedure as we are now, so Parliament would have full oversight. The regulations restrict deemed consent to routine transplants, so they continue current practice, under which express consent needs to be in place for non-routine transplants. There is no additional cost to the health system, so no impact assessment has been prepared.

In conclusion, I am glad that I am able to present these regulations to the House today. They are an important part of the implementation of the 2019 Act, as they prevent deemed consent from applying to novel transplants. The new system of consent will help to save and improve the lives of many people waiting for a transplant. Donating organs is one of the greatest gifts a person can give. I urge everybody to talk to their families and their loved ones about their wishes. I am proud that all of us present are playing a part in making something positive happen in these very challenging times. I commend the draft regulations to the House.